Why can't I stop the diarrhoea?

[Jenny06xx]

Hi all
I went to the dietician last week, fo some reason I was seriously nervous lol she was nice and went through a letter my gi sent her as he never really explains things to me an I don't like to ask.
She said I have quite severe thickening of the ileum which means no question I have to be on a low residue diet (great over Xmas lol) I have to have at least 1 ensure a day and she will see me in 6 weeks .
Ok so what is the ileum? An y is it thick lol ?
I've still gotta have the pill cam in jan so we will see what else they find lol
I've still got serious diarrhoea that will not stop I manage it in the day with lots of codeine etc but I wake up 6am running again I cannot constipated myself no matter how hard I try! This can't be normal and it's really getting me down now is there anything I'm doing wrong or should try?

 

[Welsh-bird]

Jen, your Ileum's part of your small intestine and lies between your Duodenum and Colon. The thickening can be caused by a number of factors, but are usually associated with inflammation or scaring.
Re the diarrhoea, are you taking Codeine, Tramadol and Lomotil? I was (years back) on Codeine Phosphate 30mg to control this, but it was stopped when the chances of causing constipation and then a blockage became too real and they stopped it. I understand where you're coming from when you do feel the need to 'bung' yourself up, but please be careful- a blockage is no fun! Have they done a stool test to check that this is not being caused by a bacteria, and thus not responding to these meds? Quite heavy duty if you're taking all 3!
Andrea

 

[mario]

Hi Jenny
I use loperomide (immodium) and it is very effective. However i am in remission and i am not sure you ought to use in when you are flaring.
My specialist has now told me that long term use of loperomide can cause weakening of the muscles. He changed my meds to Cholestromine. It works differently and is apparently safer.
Dusty told me about psysillium husks which are purely natural and probably safe for you, but check with your doc first.
I am currently experimenting with all of these but if i need to be sure i wont need a loo i still take the trusty loperomide. It makes my life completely normal and am reluctant to change from it!

 

[Jenny06xx]

Hi both
I can take immodium but I was taking up to 14 per day no joke!! So it was safer to switch me to codeine which was working fine an still does during the day, the lomotil I was
only on a month but was told I couldn't stay on it long term so back to codeine sorry gotta change my sig!!
so I'm taking 8 tramadol a day an 8 codeine 30mg an by
the morning I'm running again !
All my stool tests for infection are clear. Cholestramine really hurts my stomach, an my options are getting slim!
I'm dreaded eating over Xmas especially with family coming to me I'll spend my life in the loo
I've managed with the dreaded D for 7 years but it's wearing me down now, I seem to always be in pain an on the loo my family must be fed up of me considering I'm fed up of ME!
I've tried all the eliminateing diets and still no luck my only option is to not eat an that is stupid!
Well thanks anyway u 2 I'll get there someday lol

 

[beth]

Sounds like you have active inflammation which until you get it under control either surgically, drugs, or diet the D wont go away! Diet can work if it's mild but severe thickening of the TI suggests otherwise, you'll be more comfortable with a low residue diet as the others have said you dont want a blockage. I'm surprised you docs haven't bumped up the pred to help you.

Hopefully the results of the pill cam will get them to sort you out!

 

[Jenny06xx]

Bumped up the Pred lmao I've just come off them at my gastros advice as he wants me to be off it for a month to have the pill cam!!
Not really any good for me I know that but I have to do as he says so I suppose I'll have to suffer till I have it done or end up in the hosp knowing me !
Either way i pray to god they sort me properly in jan it's getting me down big time,
On another note I'm snowed in so at least I'm close to the loo lmfao how's the weather where u all are?
I'm in Cwmbran south Wales uk

 

[Jennifer]

I've had a resection where 8 inches of my ileum was removed and I had diarrhea all the time after the resection. Immodium and Lomotil weren't doing much of anything but it's less often now that I'm back on 6MP.

 

[kenny]

I had it for 5 or 6 months around my surgery, It was kind of needed as a solid mass in my intestine would have been a bad thing. D can be your friend when you have compromised flow due to inflammation. Now that I have the diseased portion of my gut taken care of I get bile induced D.

 

[DustyKat]

Hi Jenny,

If you have severe thickening of the terminal ileum I would say you lost the ability to absorb bile salts due to inflammation and scarring and that is what is causing the chronic diarrhoea. Roo has short bowel syndrome, her terminal ileum has been removed, and she was unable to tolerate any of the prescribed and OTC medications due to the pain and cramping they caused. As mario said, she is now using Psyllium husks to great effect, maybe worth a try and sure sounds like you have nothing to lose. Check with the doc first though just in case there is too much narrowing.

Dusty.

 

[Jenny06xx]

Thanks all
Dustykat your post makes so much sense to me I don't know why I didn't think of it before! I've had my gallbladder removed so I have no where to store the bile so it constantly drips in to my intestines.
I think your right that now I'm in a flare nothing is absorbing and then the bile acid is making it worse and maybe that's why I'm so stuck in this flare!
Where can I get psylium husks from?
I can't take cholestramine plus my gi won't give it to me until after the pill cam even if I wanted it lol

 

[mario]

You can get psyllium husks from health food shops. Try it first and if its any good you can get it cheaper in bulk online. Good luck!!
Ps I paid £10 for a big tub.

 

[littlemissh]

Jenny
Just wondered how things were and whens your pillcam..you have similar story to me but I didn't have treatment til after pillcam. My gallbladder was removed in april 10 and I was better for a bit due to liquid diet for few weeks before it was taken out.
Has your diarrhoea settled..if not why not try liquid diet. You could ask your gastro consultant to refer you to dietician...thats what mine did and she arranged liquid diet for bowel rest...it may work whilst you wait your cam.

 

[bry33]

Hi all
I went to the dietician last week, fo some reason I was seriously nervous lol she was nice and went through a letter my gi sent her as he never really explains things to me an I don't like to ask.
She said I have quite severe thickening of the ileum which means no question I have to be on a low residue diet (great over Xmas lol) I have to have at least 1 ensure a day and she will see me in 6 weeks .
Ok so what is the ileum? An y is it thick lol ?
I've still gotta have the pill cam in jan so we will see what else they find lol
I've still got serious diarrhoea that will not stop I manage it in the day with lots of codeine etc but I wake up 6am running again I cannot constipated myself no matter how hard I try! This can't be normal and it's really getting me down now is there anything I'm doing wrong or should try?

just curious when you use the bathroom do you have nasuia and feel the need to throw up at the same time?

 

[Josephine]

just curious when you use the bathroom do you have nasuia and feel the need to throw up at the same time?

Yes I had before told crohns and now.